The moment we realized people were listening

When you spend day after day walking the halls of the Senate Office Buildings, telling your stories and those of other families like yours, you spend a lot of time wondering if anybody is listening, if anything you’re doing is making a difference. There’s a lot of self-doubt in putting yourself out there: is there any point in speaking up? Is putting our children in the public eye really worth it?

We had meeting after meeting and went into one office after another. We told our stories with sympathetic staffers; we met people who nodded at all the right times and who told us they cared about our children. We spoke with the press and told our stories at rallies and press conferences. We shared stories on Twitter, and watched the retweets and likes pour in. And yet, in spite of it all, several weeks in, we found ourselves wondering, “Is anybody listening? Is all of this effort making any difference at all?

We had been keeping careful track of our office visits. We have a spreadsheet and pages of color-coded notes. We knew who we had visited, in which offices we were able to meet with a staffer, who the staffer was, and whether or not we had followed up. We were also keeping track of the senators we had met. A few of them we wrote in parentheses, because they were chance hallway encounters, and we didn’t figure that really “counted.”

One of those chance encounters was Senator Jack Reed, from Rhode Island. On our first day on Capitol Hill, our two families were in the Senate Democrat media center recording our story for #AmericaSpeaksOut. Senator Reed came in while we were there. He came up to us, greeted us, greeted our kids (“Hi, I’m Jack!”), he asked about our kids, and we told him a little bit about our stories and what we were doing. We showed him our binder. But because it was only a chance encounter and not a planned meeting, and because we didn’t have any stories from families in Rhode Island to share with the senator (yet), we wrote his name in parentheses on our list, figuring it didn’t count as a “real” meeting.

A month later, we stopped by Senator Reed’s office. His staffers recognized our children Timmy and Xiomara and said to us, “You met the Senator, didn’t you? About a month ago? He kept talking about meeting you, and he spoke about your kids on the Senate floor the next day.”

We dropped off some materials, thanked them, and left. We piled our kids into an elevator down the hall (no easy feat!) and were about to head downstairs when one of Senator Reed’s staffers ran down the hall. “The Senator just came back,” she said, “and we told him you stopped by. He wants to see you.” And so we headed back–he did, indeed, remember us. We chatted with the Senator for a few minutes; he asked about each one of our children; we thanked him for his support; he thanked us for sharing our stories.

That evening, we went home and searched on YouTube for Senator Reed’s Senate floor speech from the day after our initial encounter. And sure enough, he did talk about our children. A chance encounter, a meeting we thought was so inconsequential that we were writing it in parentheses, and a U.S. Senator told our stories on the floor of the Senate.

That’s when we realized that people are listening. That’s when we realized that when you tell your story, you never know where it will end up, or what the impact will be. And that’s when we truly began to understand the importance of what we are doing and the power of stories.

Senators Collins and Murkowski have both spoken about stories they’ve heard from their constituents and the impact those stories have had on them. We have heard on multiple occasions the impact our stories have had, and we have seen that a personal story has the power to influence a national debate.

And that is why we keep saying, “Speak up. Share your story. Your voice matters.” Because your voice does matter. Your story matters. And when you send your story out into the world, you never know where it will end up or the power that it will have.

~by Michelle

 

 

 

Jeff Flake Looked Me in the Eye and Then Voted to Take Away My Daughter’s Healthcare

Guest post by Austin, from Arizona

Many have praised Senator Jeff Flake’s recent piece in Politico as an act of courage. As an Arizona constituent, I only wish that courage was matched in his recent votes. In the piece, he wrote “too often, we observe the unfolding drama along with the rest of the country, passively, all but saying, “Someone should do something!” without seeming to realize that that someone is us.”

And yet, Senator Flake voted “yes” three times on the attempts to repeal the Affordable Care Act, and in so doing, cut Medicaid by $772 billion. His last yes vote was hours after meeting with my family, his constituents from Arizona, in his DC office.

In that meeting, we shared my daughter Melanie’s story with the Senator. We shared how when we brought Melanie home from Hawaii in 2012 she was in congestive heart failure. We shared how our delight and excitement about our new daughter soon turned to an unimaginable fear.

Imagine for one moment you were us: 3 days after bringing your infant daughter home, you are told that she needs open heart surgery. That surgery would need to occur within the next two weeks – and to receive that surgery, you need to put a deposit down of 10 percent of the estimated cost. Imagine that number is one million dollars, and in order for your child to live, you need to come up with $100,000 – and remember this needs to happen within a week. Imagine hearing that over the course of thirty minutes, during which you are inundated with forms outlining expected fees. Imagine that even though you have what is considered to be the best healthcare insurance in America, Tricare, you cannot get her enrolled quickly enough to cover the procedure – even though her life is literally at stake.

That was the story I shared with Senator Flake. I then told him that due to the passage of the Affordable Care Act, Melanie was saved; thanks to Medicaid, we made the payment.

Doctors predicted that our little girl would never walk or talk, and that we shouldn’t put much faith in her having a bright future. But as Senator Flake saw with his own eyes, the doctors were wrong. Against all odds, today she runs around, plays with her siblings, climbs bunk beds when we aren’t looking, and gives all the sass any soon-to-be 5 year old can give.

In Senator Flake’s office that day, I told him how fundamental the ACA was to our family. How, the ban on lifetime caps is the only way to guarantee my child life, how terrifying it is to allow insurance companies to discriminate against those with pre-existing conditions, and how vital Medicaid is to my family. I appealed to him as a parent and as an American. I asked him to do more than vote without hearings or expert testimony – I asked him to do more than simply vote with his party. He literally just wrote a book about bravery in the face of party pressure.

Senator Flake listened to me explain how I chose life. How my husband and I chose to take the “personal responsibility” to adopt our beautiful daughter. He watched her playing in her brother’s arms. He looked at the medical bills in my hands that detailed the out-of-pocket expenses –  totaling $13,092 a month – to cover home nursing. (Children like Melanie can’t go to regular daycare, because they have medical needs that require skilled nursing.) Tricare does not cover nursing if you work or go to school. Medicaid does. So many people talk as though Medicaid is about people not wanting to work, but for us, it’s the exact opposite. Medicaid allows me the opportunity to work.

Senator Flake heard me explain how vital Medicaid is in our lives, how it covers things Tricare outright refuses, how critical it was to saving my daughter’s life shortly after she was born – and how fundamental it is to her future.

He looked at my daughter, he looked at those numbers on the bills, and he uttered “oh my word.” He heard my friend, who joined us in the meeting with her medically complex daughter, ask “please think of Melanie and children like her when you cast your vote.” And then, hours later, he voted on party lines: yes. Yes to repeal, yes to ripping away Melanie’s security, yes to a process he himself said “no one could defend.”

So, Senator Flake, I am trying to understand the reasoning behind your votes. I am an Arizona voter. You are my Senator. You represent me. You represent Melanie. Please help me understand how your “yes” vote represented my family.

You wrote that “someone should do something” and that “that someone is us.”

That someone was you, Senator Jeff Flake. And you voted yes.

~ by Austin Carrigg

This Island

Being a parent of a medically complex child is a terribly isolating experience. It is lonely as lonely gets. The moment you hear that initial diagnosis, you are instantly transported to a tiny island. Population: you.
 
Last month, in a moment of hope and desperation, my friend Michelle and I decided to take our kids to Capitol Hill so senators could see the faces of those who would be affected by their votes on healthcare. We wanted them to know our kids and see that kids with trachs and feeding tubes and rare syndromes and medical records a mile long are just kids…who need healthcare.
 
We asked families like ours across the country to share their stories, and we offered to hand deliver them to their senators.
 
And share, they did.
 
For the past six weeks or so, I have been surrounded by parents just. like. me. Parents who really understand and just *get it.*
 
I have been surrounded by parents who know what it’s like …
 
… to feel completely helpless as you watch your child fight for her life;
 
… to hand over your baby to a surgeon, moments after signing consent forms detailing the worst case scenarios;
 
… to sleep in an uncomfortable hospital chair night after night after night;
 
… to completely fill your calendar with your kid’s medical appointments and therapy sessions;
 
… to get back up again after falling apart, over and over;
 
… to be a little too familiar with 911 calls, ambulance rides, and emergency room visits;
 
… to celebrate the ‘inchstones’ that no one ever thinks about, like your child breathing without the help of a ventilator for 30 minutes or your 3yo learning to eat by mouth.
 
I have been surrounded by parents who know what it’s like to drown in the loneliness, day after day.
 
Like I have been doing for weeks, I spent all day Thursday on Capitol Hill visiting senate offices with a binder full of stories of children just like my daughter. At the end of the day, I inhaled a terrible dinner and rushed to a MoveOn rally where I listened to story after story from people just like me, and heard senator after senator promising to fight tooth and nail for all of us. And then I stood with my Little Lobbyists family next to me, as I took my turn at the mic, to tell everyone why we needed to keep sharing our stories.
 
When the vote was announced later that night, I felt relief more than anything. Though I know this fight is not over, I felt relief that we were safe for now. And relief that my daughter would continue to receive the medical care and services that will allow her to survive and thrive and … be a kid.
 
I stayed late at the Capitol that night with my friend Michelle and my 3 yo daughter Xiomara, thinking of all the stories I had heard. The crowd had all gone home; it was quiet and near empty and almost 4am.
 
At this weekend’s Our Lives on the Line rally, I got to meet and hug Ali Ranger, an amazing mama fighting for her kid, and my kid, and all kids. I got to tell Natalie Weaver, who is as kind as she is fierce, that she inspired me to share my story publicly. I got to hear Democratic Leader Nancy Pelosi thank the Little Lobbyists from the stage for sharing our stories.
 
We marched to the White House after the rally, alongside hundreds and hundreds of people who believe what I believe: that healthcare is a human right.
 
For the past six weeks or so, I didn’t feel lonely at all. Not one bit. I didn’t feel lonely in the halls of senate office buildings, or at the rallies, or at the Capitol at 4 o’clock in the morning. I have been surrounded by the love and strength of families who have walked in my shoes and felt my fear and shared my hopes.
 
To the parents hearing that diagnosis for the first time right now, and to the parents who are feeling lonely like I once did, I say to you: there is an army of parents just like you on this island. We understand.
 
And, we can’t wait to hear your story.
 
Speak up, my friends. Your voice matters. Your story matters.
~ by Elena

Photo courtesy of Carrie Collins

Our response to today’s vote

Today’s vote leaves us heartbroken, terrified, furious… and more committed than ever to fight tooth and nail for our children.

These are not new emotions for parents of kids with complex medical needs.  We experienced them every day for months in hospitals across the country, as our infant children were given unimaginable diagnoses and we slept in chairs beside them as they clung to life. We experience them as we beg doctors, nurses, social workers, and therapists to give our kids quality care and attention, so they can one day breathe on their own, or walk on their own, or go to school with their peers.  It is stressful, and it is exhausting, and you never give up, because they are your kids.

For the past several years, at least, we at least had the comfort of knowing we had a safety net under us. When medical bills went into the millions of dollars, we knew that our insurance companies could not put a cap on the care our kids need to survive. We knew that the preexisting conditions that they were born with would not make insurance unaffordable or impossible to maintain.  And many (though not all) of us knew that Medicaid could help to pay for the necessary care that private insurance would not.

The proceedings over the past several months, culminating in today’s Senate vote, ripped that security from our families.

This is why we have visited Capitol Hill on a near daily basis for the past month and have been actively working against this bill in other ways for much longer.  It is not our idea of fun.  We really, really do not enjoy the publicity.  We do not have a secret political agenda.  Our agenda is that we are terrified that our kids are going to lose the care they need to survive and thrive, and we will do whatever we can to make sure that doesn’t happen.

Today’s vote confirmed that fear.  We must now watch as the Senate takes as little time as it possibly can to decide the fate of our children.  We must now depend on Senators whose public statements questioning this process and expressing concern for the vulnerable have been shown to be disingenuous at best.  Senators who have not held a single hearing to educate themselves on this bill, who have thus far ignored the chorus of health professionals pleading with them to “do no harm,” and who have shown zero interest in meeting with us or our children to hear our concerns.

But we have faced fear before, and overcome it.  Our children have taught us well. 

So tomorrow we will be back fighting our hearts out on Capitol Hill.  We will go to every Republican Senator’s office that we can and show them the hundreds of stories of medically complex kids that we have collected. We will ask them to meet with us personally. We will ask them to understand our issues and fears.  We will ask them, consistent with their ardently professed pro-life beliefs, to commit to protecting our children.  It will be stressful, and it will be exhausting, but we will never give up, because they are our kids.

To everyone that has supported us, and especially those who have been brave enough to share their stories with us – thank you.  This is not over, and we need your voices as loud as you can make them for the next few days.   To those of you who, like us, have children with complex medical needs, we want to share your stories. Please share them with us.

Dear Senator Capito

This is a letter written by Christy, from West Virginia. Her son, Ethan, is one of our Little Lobbyists and Christy and Ethan have been trying, without success, to schedule an in-person meeting with Senator Capito. This is a letter we delivered to Senator Capito this morning:

Dear Senator Capito,

As a constituent I am requesting you to not abandon ACA protections without other protections in place. My concern is not the name of the legislation but what the legislation can do to protect children like my son Ethan. West Virginia relies on 77% of its Medicaid funding from the federal government. If that funding is reduced, simple math indicates cuts in services will have to occur. Over 2,000 children in the state depend on the Medicaid waiver programs which potentially would be cut or capped because their families’ income excludes them from SSI benefits. Without this benefit, children will not be able to receive or would receive reduced access to necessary therapies and other services. They could lose access to private duty nursing which in turn would eliminate the possibility of them safely attending public school in the least restrictive environment as guaranteed under current federal IDEA law. Such a loss would also put their families under additional financial and emotionally stress. These children did not ask for these disabilities, neither did their families. They need to be protected and deserve to be protected; it should not matter which state or county they reside in they are Americans, and need their government to look out for them.

At 17 years old, I signed up for the VA army national guard and served 6 years while completing my teaching degree. I currently teach high school history and my classes are offered as Duel Enrollment meaning that my students earn college credit. My husband volunteers in our community and will receive a social work degree in May.  He is a former small business owner. We are active members of our community trying to make it better who also support the local economy.

If we lost access to Medicaid, one of us would have to resign from our positions to take care of Ethan. He would not be able to attend public school and would receive homebound instruction. This is not fair to him, to us or to the community that we try and serve.

Ethan deserves the same opportunities as any other child within our community. We love him, we love our home, which we bought 12 years ago, we love our community. As our representative please remember Ethan and other children like him when you cast your vote. I know in the eyes of the country we are just one more family, but this weekend you made time to spend with President Trump but you have not had time to meet with us and you are OUR representative. If you can’t meet with my son please take the time to meet with the children who are walking the halls of Congress this week. They are there representing my son and thousands of children with disabilities who are too sick or live too far away to come and visit. Please think of these kids before you cast what likely will be the deciding vote.

Thank you,

Christy

Inwood, WV

Henry and Jackson

Guest post by Anna. Her sons, Henry and Jackson are two of our Little Lobbyists. For months, they have been driving two and a half hours (each way) to lobby on Capitol Hill. This is their story. 

In September of 2009, when my son, Henry, was seventeen months old, he had a Meckel’s Diverticulum rupture in his stomach.  He has a bleeding disorder known as Von Willebrand Disease, and because his blood does not clot properly, he faced a total medical crisis.  A rare, usually insignificant, problem led to complications that resulted in Henry almost bleeding to death. He was rushed to Johns Hopkins hospital, where he received a blood transfusion, and spent ten days in the ICU while the doctors at the hospital saved his life.  On the last day of Henry’s stay, all the veins in his little arms, legs, feet, and hands had collapsed due to the constant blood draws to monitor his blood factor counts.  For his final blood draw, they had to take the blood from his scalp.  I stood outside of the room, because I couldn’t bear to watch. I was weak. I was exhausted. And I was hungry. I’d spent all ten days and nights in the hospital with Henry. At first, I had been living off of Doritos and potato chips from the vending machine until the last four days of his stay, when my husband’s co-workers had all chipped in to buy me a Subway gift card for the Johns Hopkins food court. We were a family living on one income with two children with medical complexities. We were in over our heads in medical debt and credit card bills. Our budget did not allow for us to eat at food courts. When Henry’s blood draw was over, we filled out the discharge papers, and headed home to Pennsylvania.  Henry had been on a strict hospital food diet, was still hiccupping from screaming during his blood draw, and had one simple request when I strapped him into the car. “Nuggets?” he asked me. So I pulled into the nearest McDonald’s, counted out enough money from the change that was in the console of our car, and I bought my brave boy a Happy Meal.

My name is Anna. I am a stay at home mother of two, who lives in Hanover, Pennsylvania, and I never thought that I would ever need Medicaid. My husband and I began our married life in 2004 in a comfortable position in the middle class. We both had good jobs, and were thrilled when we found out we were expecting six months into our marriage. After our son, Jackson, was born, I found a happy balance between work and home. When Jackson was two years old, I found out that I was expecting my second son.  At that same time, Jackson began having some inexplicable health issues. He kept getting sick, and we didn’t know why. I was missing so much work that my husband and I decided that I should quit my job to give Jackson my full attention, until we could figure out what was wrong.  Losing half our income was difficult, but it was manageable, as long as we adhered to a strict budget. In February of 2008, I gave birth to Henry, six weeks early.  His health issues began immediately. He spent over a week in the NICU, and was diagnosed with a heart defect and failure to thrive at two months old.  Thanks to Google and a very attentive pediatrician, we discovered the answer to both of our sons’ medical issues in October of 2008, when Jackson was three years old and Henry was eight months old. They have a mutation of the PTPN11 gene, also known as Noonan Syndrome.

When children are diagnosed with a genetic condition like Noonan Syndrome, which affects various systems of the body, they are referred to a hospital that specializes in rare diseases for genetic counseling.  We were sent out of state to Johns Hopkins hospital, where they began testing the boys for every possible complexity related to NS. Our financial situation had already become more strained with Henry’s NICU stay, cardiology visits, and the genetic testing. Jackson and Henry’s diagnosis had cemented my decision to stay home, so we were still only on one income. My husband’s employer insurance had high deductibles and copays.  Once we began adding more specialists, procedures, and prescriptions to their medical care, the financial strain became a lot to bear. We relied on credit cards for everything. It was not only the medical bills. It was the added costs of gas money to get to Baltimore multiple times a month.  It was the cost of having to purchase meals when the visits lasted through lunch and dinner.  Henry’s Meckel’s Diverticulum rupture really pushed us over the edge. By 2010, our credit cards totaled $42,000, and we were receiving medical bills in the mail every day.  Because the credit card balances were so high, and the cards were maxed out, the card companies closed them.  Without the safety net of the credit cards, we were lost.

Our financial worries were nothing compared to the worries about our children. 

As is common with genetic conditions, the boys were always getting additional diagnoses, which meant more specialists and prescriptions.  Our lives were a jumbled mess of surgeries, specialists, prescriptions, hospital stays, emergency room visits, and lots and lots of debt.  I can’t begin to tell you what it’s like to see BOTH of your babies suffer. Spending their toddler years in hospital beds. Throwing up at their own birthday parties. Missing trick-or-treat and Christmas parties due to illnesses. Not getting to roller skate or play sports or rough house like other children, because of their low muscle tone and bleeding issues.  But to watch all of that – while not able to make up for all they were missing with other activities, like movies or vacations or trips to the zoo – was heartbreaking. During the times they were feeling better, we couldn’t do anything, because we couldn’t afford it.

Our days and nights were spent caring for the boys – distributing their medicines, cleaning up vomit, monitoring fevers, and keeping them from injury.  I also spent that time trying to find ways to pay for their care.  We held multiple yard sales a year. I would sell the boys’ clothing as soon as they outgrew it. If it was a few days before payday, and we needed to pick up a prescription, I would find a childhood keepsake and put it on eBay. Or I would choose a piece of furniture that we did not use often, and I would put it on Craigslist.  We collected change, and we would cash it in for baby food, for gas, for milk. Sometimes there was nothing we could do.  At one hematology visit, the boys had eighteen tubes of blood taken.  It had been a rough day, and they wanted Happy Meals on the way home. But our bank account was overdrawn, and there was no change in the console. So I listened to my two little boys cry in the backseat the entire way home, over their sore arms and empty bellies. They would have to wait over an hour until we arrived home to eat.

I heard about Pennsylvania’s Medicaid program for children with disabilities though a fellow Noonan Syndrome mom on Facebook. I had always assumed that Medicaid was only income based, and I did not think we would qualify. After I researched the program, it seemed to be the answer to our financial problems. It was not an easy decision, though. Johns Hopkins had saved my children’s lives. Since Medicaid doesn’t cross state lines, we would have to make the switch to Hershey Medical Center, and say good-bye to the physicians we had come to trust. But at that point, we were on the verge of filing bankruptcy and losing our home. So we did it. We applied for Medicaid in June 2012. In no time at all, the boys were approved, and Medicaid began paying all of the boys’ deductibles and copays. Anything that my husband’s employer insurance doesn’t cover, Medicaid takes care of it.

It is important to me that people understand the true benefits of Medicaid.  It is not only the medical care. It is also the feeling of finally being financially responsible. It is the feeling of self-worth. It is knowing that we can pay our bills. It’s the comfort of no longer having to decide between picking up a prescription and picking up a gallon of milk.

From 2008 until 2012, we had nothing. We did nothing. We went nowhere. Our only trips were trips to the hospitals, or were hosted by generous family members.

But now we pay our bills. We did not lose our home. We did not file bankruptcy. Slowly, but surely, without the hundreds of dollars a month in medical bills, we are pulling ourselves out of the rubble. We are paying our debts. We stopped getting collection notices. We stopped getting insufficient funds fees. We stopped being a burden on the utility companies and the credit card companies. My children now eat better, because healthy food is expensive, and when we were struggling, we could not afford fresh fruits and vegetables. In the five years since the boys were approved for Medicaid, we have been able to start getting on our feet and rejoin society. Our credit card debt is now below $10,000. Bill collectors haven’t called us in years. Our credit score doubled, and we are stimulating our economy.  We still have to live on a budget. We are still on one income, because the boys’ immunity and stomach issues contributed to a decision to homeschool. Life as a parent of children with medical complexities will never be easy, and it will never be worry-free. But we are surviving. We no longer feel hopelessness. We are grateful for the security that Medicaid has provided. My husband and I went years without sleep, worried about our children, worried about money, and worried about how we would pay for the next major health crisis. We now know what security feels like, and we can focus all of our time and attention on keeping our children healthy.

If cuts are made to Medicaid, the states will need to decide who will be affected. Often, when these cuts are discussed, state legislatures consider the families like ours, who qualify for Medicaid under a disability waiver. They do not think of the families who have more than one child with medical issues, or the severity of those medical issues, or the costs of the deductibles, the treatments, the prescriptions, the emergency room visits. Or the gas money to get to nearest hospital qualified to care for medically complex children, which could be an hour, or two hours, or three hours away. My husband’s income could double this year, and if my boys lose their Medicaid, we would still go bankrupt within a few years.

I have already been where we are headed. I already know what it’s like to NOT have Medicaid. The sleepless nights, the going without, the fear of losing everything – all of that is still fresh in my mind. My heart aches for those who are about to find out what that is like.

I do not want to go back to that life. My children have been through too much and come too far for me to tell them that we are going back to where we were.  

It is inconceivable to me that any member of Congress would do that to children, especially children who already struggle physically and emotionally.  It is inconceivable to me that any member of Congress would do that to parents who already struggle physically and emotionally as they care for their children with medical complexities. It is inconceivable to me that any member of Congress would consider cutting a family’s lifeline.  Medicaid is a lifeline. Families affected by poverty or medical complexities cannot survive without it. Every single American is one job loss, one diagnosis, or one accident from needing it.  Making cuts to Medicaid is equivalent to cutting off a family’s heat in the winter, or taking a child’s shoes away, or clearing their cupboards of food. Because without Medicaid, many families cannot afford heat, or shoes, or groceries. Trust me.

Congress is not just taking our healthcare funding.

They are taking everything.

And I will fight with everything I have to hold on to it.

#saveMedicaid #savetheACA #protectourcare

 

 

 

 

 

Dear Senator

Dear Senator,

We are proud parents of children with complex medical needs, just a few of the millions of families like ours across the country, including your state.  While we agree that our current health care system has problems, a bill like BCRA, which would eliminate protections essential to the livelihood of medically fragile children and their families, is not a fix for those problems.

We know that you have heard from numerous experts who have provided statistics and data on the consequences a bill like BCRA would have on the most vulnerable populations in your state.  We write because we are the experts on medically complex children; we are the experts on the care they require; and we are the experts on how it affects our families.  They are not just numbers in a report; they are our whole lives.

If we lose Medicaid, we are the ones who will have to decide between putting our child away in an institution or filing for bankruptcy.  If we get laid off and lose our employer-sponsored health insurance, our kids are the ones who will face discrimination against pre-existing conditions.  If our child is admitted to the ER or needs a new surgery, we are the ones who will worry whether this hospitalization is the one that puts us over an annual/lifetime cap, leaving our children uninsurable and our families facing financial ruin.  Any health care bill that does not preserve existing protections on these issues will harm our children.

Our children may have spent more than their fair share of time in hospitals, and may depend on tracheostomies and ventilators to breathe, they may get all their nutrition via feeding tubes, and require a ton of medication to make it to the next day, they may wear hearing aids and speaking valves; but they are also children.  They are children who go to school, and play soccer, and go to story time at the library, and love robots and dinosaurs and princesses, and have fun at the playground, and watch Sesame Street, and laugh with their siblings, and so much more.  At the end of the day, they are just kids … who need affordable quality healthcare.

We respectfully demand that you consider our voices and hear our stories and oppose this bill.  We stand ready to work with you on a health care law that protects our children and families.

Sincerely yours,

Parents of the Little Lobbyists

 

* A version of this letter was hand delivered to a majority of senate offices along with stories from their constituents.

Who are the Little Lobbyists?

You may not realize it, but we are (or at least were, in our pre-healthcare-fight days) intensely private people.

A little over a month ago, Elena and I, along with our friend, Erin, were sitting around Erin’s kitchen table eating leftover birthday cake. It was late at night–usually we can’t get together until after the kids are in bed–and the Senate was in the process of drafting their version of the healthcare bill. We were trying to figure out how to make our voices louder. All three of us are from Maryland, and our senators had both taken vocal stances against the bill. For months, we’d been speaking up individually–writing letters, making phone calls, going to town halls and protests, encouraging friends and family to do the same, even taking what was, at the time, a very scary step: giving up our privacy and inviting a reporter into our home to bring attention to the lifetime limits ban.

But it wasn’t enough.

We felt helpless. It’s a very scary thing, living in one state and knowing that senators from other states are making decisions that have the potential to have devastating impacts on your child, and yet, since you aren’t represented by one of those senators, they aren’t interested in listening to you. (And, arguably, many of those senators aren’t even interested in listening to their own constituents!) No one is going to create a Bayou Bail-out, Sunshine Sell-Out, or Kodiak Kickback for Maryland or for most of the rest of the country. And even in states who do receive special treatment, it won’t be enough for kids like ours.

But we do live near Washington, DC. And we have friends who live in other states who don’t have easy access to their senators’ offices. So we formed a plan…we’d tell our friends we’d be happy to take their stories personally to their senators’ offices on their behalf. And then we’d spend a day on Capitol Hill, telling their stories. Our children would come along, because we want people to understand that kids who have complex medical needs are just kids. Real kids. We picked a date a little over a week out, and then started trying to figure out how to collect stories.

contact your senators

We posted our plan on a few Facebook groups that we’re part of–groups for families of kids with various complex medical needs. We involved our kids, asking them to write thank-you notes to the senators who opposed the bill. We started collecting stories, hoping to take 20-30 stories with us to the Hill. Before we knew it, we had 100 stories, then 150, and now over 180. We were collecting the stories using a Google form, so all the information needed to be formatted and pictures added. We were up until 2 or 3am every night formatting those stories…working for a few minutes on the computer, then racing up the stairs when the ventilator alarm went off, and then back down the stairs again to sit in front of the computer.  One night, through tears of exhaustion, I reached out to some friends to help with the formatting.

On June 20, we took our first trip to Capitol Hill. With us we carried a binder full of stories of children across the country who would be devastated by the healthcare bill. We quickly realized that a day wouldn’t be enough, so we made plans to go back again, and again.  Our children have spent seven days on the Hill, and will be back Monday. Each day, we’ve been joined by different families–families from Maryland, DC, Virginia, West Virginia, Pennsylvania, and Arizona. Some of the families we’ve walked the Senate halls with are Democrats; some are Republicans. We’ve spoken with senators, we’ve pleaded our case with healthcare staffers, we’ve talked to the interns answering the phones, we’ve put parents on speaker phone who couldn’t get through when they tried to call. We’d be there every day, if it weren’t for the needs of our children.

A friend from grad school contacted us and asked if we would like her help in setting up a website. So now we have a website. Someone else suggested Twitter.  None of us are Twitterers (tweeters?), but we decided to figure it out. Other friends offered to reach out to news media. We reluctantly agreed (remember the intensely private people part?).

We’ve collected stories from all over the country–42 states at last count. (We’ve been sharing those we have permission to share on our website.) We’ve made more than 50 senate office visits, with more to come. We’ve spoken at press conferences, have been interviewed by news media, and have connected news media with other families trying to share their stories. We’ve made connections with other families who have spoken out against the bill. We’ve joined forces with groups across the country.

Every spare minute we have has been devoted to this effort. We’ve been up into the wee hours almost every night–most of our advocacy work happens between 9pm and 2am. Strategic planning via text message is a common 1am occurrence. Dishes have gone unwashed, the kids’ laundry has been piling up (until my mom happened to be in town for a day and got us caught up). Every penny of the costs of Metro fares, gas, and inkjet cartridges has come from our own pockets. We have all been using up precious vacation days to lobby on Capitol Hill. And when you’re a parent of a kid with complex medical needs, vacation days are hard to come by–most of your vacation days are spent on surgeries, hospital stays, and traveling for medical care, because sick leave is never enough.

We’ve been accused of using our children as political pawns. We’ve been accused of doing this for our own personal gain (though if “personal gain” means fighting for my child’s health and well-being, then I’m guilty). We’ve been accused of being “paid protesters.” I think almost every single parent I’ve talked with who has come out publicly has been told, like this mom, that their child is too expensive and deserves to die.

Fighting for our children is nothing new. We’ve fought for them since the day they were born. We’ve fought for them to get the surgeries they’ve needed. We’ve fought for appropriate support for them to attend school. We’ve driven across the country to make sure they have access to the specialists that best understand their medical needs.

Why am I telling you this? It’s not because I think anything about our efforts is particularly unusual or commendable; there are advocacy groups all over the country. It’s not because I’m asking you to support us financially. I’m not.

It’s because I want you to understand that this matters. There is no big organization or lobbying group behind us. We’re just parents. Parents who care.

It’s because this is important enough for us to be willing to give up our privacy. Our children are representing kids across the country who will be devastated by this bill.

It’s because we want our children to know that they matter. And we want them to learn how to speak up and fight for themselves.

It’s because I want you to know that when we joined our voices collectively, they became bigger than any of our individual voices would have been on their own.

It’s because we want your help. Share our stories. Let us tell your story. Tell your story to your local news media. Call your senator. Show up at your legislators’ local offices. Call your friends and family and ask them to do the same.

And for those of you who are in this fight with us. Thank you. From the bottoms of our hearts, thank you.

 

 

Fight for Melanie

Guest post by Austin, from Arizona

When we brought our little girl home never did I imagine I would have to fight the fight we are now. I never thought people in this world could be quite as cruel as they are showing themselves to be. You see, My beautiful little girl was born with Down syndrome, a congenital Heart Defect, Profound Deafness and a genetic deletion.

Melanie is our whole world, she has changed every person in our family for the better. She has also taught us lessons in life we never knew we needed. She has taught us to cherish every day we have with each other, to be happy that we’ve made it to see another day. We’ve almost lost our girl more times than I’d like to remember. Our boys have seen their baby sister stop breathing and the heroic efforts of medical personnel at Boston Children’s Hospital to successfully resuscitate her. Now she is thriving and literally running this show we call our life!

Our sweet baby has received amazing medical interventions that without the help of Medicaid to offset what our insurance doesn’t cover she would not have been able to access. Her open heart surgery at 8 weeks old and hospitalization from aspiration pneumonia that happened 12 hours after heart discharge were covered 100% by Medicaid. Medicaid also subsidized her intensive physical therapy. This groundbreaking treatment took our 18-month-old from not being able to sit unassisted to walking in 6 short months. When a medical facility refused to give our sweet girl a cochlear implant solely because she has Down syndrome, Tricare decided to not to cover it either. Through the years there have been so many other things that add up, co-pays on nursing care and ABA. Paying for the formula that Tricare refused to cover, thickening gel required to keep her safe eating by mouth and on and on.

But TODAY, our government is attempting to cut these life-saving Medicaid plans. The cuts proposed will leave so many children like ours without medical care. U.S. Senator Bernie Sanders said, “Make no mistake about it, thousands of Americans every year will die unnecessarily if this legislation is passed”. U.S. Senator Tim Kaine says “The GOP health care bill guts protections for people with pre-existing conditions” and Senator Patty Murraysays “This “new” version of #Trumpcare tells anyone who has a preexisting condition or who gets sick: tough luck.”

 

We take this as a direct attack on our family and on our children, and we refuse to take it lying down. We’ve met up with an amazing group of families with the group Little Lobbyists in DC. Together with families like ours we have been walking the halls of Senate and sharing stories of kids just like our Melanie that are going to be affected by these catastrophic changes.

We took the time to call Senator Jeff Flake‘s office and were promised a return phone call that never came, we then walked in and asked for a meeting and were given an email address. We emailed before we even left his office, 2 days passed without a word. We again went into Senator Flake’s office and explained we would come back every day until we were able to speak with someone. Like magic a staffer appeared! We compassionately pleaded for her to pass on our concerns with the medical bill and again requested a sit down with the senator. Then an email magically appears that the senator can meet with us after the session closes. Please take the time to reach out to your senators and tell them you stand behind Melanie and urge them to oppose the current medical bill. If you don’t get the response you deserve persevere!

Your senators can be reached at: (202) 224-3121

How It Happens

Everyone, this is Senator Kaine talking about how Medicaid cuts affect our kids. Literally, our kids. Specifically, Anna and Isaac, two Little Lobbyists who visited Senate offices with us, and Dylan and Declan, two of our trach buddies. I couldn’t be more proud of my fellow parents and these little warriors and a U.S. Senator who is listening to his constituents and fighting tooth and nail for them.

I also want to share with you how this came to be. Through the magic that is Facebook, Kimberly Gould Crawley and I found each other. She shared her son’s story with us, and we hand delivered it to Senator Kaine’s office in one of our Capitol Hill trips. The next day, we heard from Joe, the Senator’s deputy press security, asking to be put in contact with Kim if possible, which we immediately facilitated. He spoke with Kim and a day or so later, Isaac’s story was featured on the Senator’s Facebook page, highlighting how his life depends on access to affordable quality healthcare.

I was so moved, I contacted Joe and thanked him and asked “do you want more stories about families with medically complex kids talking about how this bill will affect them?” And he said yes please. So I posted in several FB support groups looking for VA families. And Amy Hill and Corinne Kunkel were among the several who responded and were connected with Joe. And I asked Angie Darnell Voyles, my fellow trach mom and Cincinnati Hospital buddy; she said yes right away and was connected with Joe. Their kids Declan and Dylan and Anna were all featured on the Senator’s page within the week, helping put a face to those who will be harmed by Medicaid cuts.

And every single one of these Warrior Mamas did such an amazing job sharing their story and advocating for their kids that Joe asked if they would be willing to meet with the Senator in person (“uh, yes, please. Duh.”) So that was arranged, for Monday this week, the same day as our lobbying day; bad timing but so worth it. They met up in Springfield and had a heartfelt passionate discussion with the Senator, sitting AT THE SAME TABLE. He listened to their stories and played with their kids and promised to fight for them. He spent TWO HOURS with these families. The round table was reported in the Washington Post online that same night. And then the next day, Senator Kaine is on the Senate floor giving a voice to these kids and fighting for them. He tells their stories, each one, name by name, story by story. (Watch the video!)

I’ve been in touch with these four families on a near daily basis. They are as busy and sleep-deprived and energized as can be, and they continue to share their story and fight for their kids.

That’s how it happens, folks.

If you ever doubt for a moment whether that phone call or email or rally makes a difference, the answer is YES. If you ever wonder if anyone is interested in listening to your story, the answer is YES. If you ever question whether you can really make a difference, the answer is YES.

Your voice matters. IT MATTERS. Now, go on and use it. Call, write, attend, share. Repeat. Repeat. Repeat…

 

~ by Elena